Ten Things I Wish I Had Known When I Was Diagnosed With Breast Cancer

I still find it hard to believe that next month it will be over ten years since I was first diagnosed with breast cancer; and even though it’s a decade later, cancer’s chimes still reverberate in my life. When I look back on all that I have learned through the experience, I feel sad for all I had yet to know back then. I can’t help wondering how much my experience might have been different if I had known then what I know now.

One thing I’ve now come to believe is that we owe it to those who come after us to share our hard-earned wisdom, in the hope that it will make their path towards recovery that little bit smoother. So in that spirit, here are ten lessons I’ve learned since I was first diagnosed with breast cancer. I hope you will add your own pearls of wisdom in the comments below.

1. Being diagnosed with cancer changes everything about your life

Cancer invades not only your body but every other area of your life – your relationships, your finances, your career, your sense of self. Once you’ve been baptised in the fire of cancer, your life as you knew it will be irrevocably changed. Life is uncertain for all of us, but those with a cancer diagnosis have a heightened awareness of that uncertainty. Cancer lays bare your vulnerability and underlines the uncertainty of life. As writer and prostate cancer survivor, Dana Jennings wrote, “mortality is no longer abstract, and a certain innocence has been lost.”

2. You will experience bone-crushing fatigue

Many people think that fatigue is something you only experience during treatment. In fact, many of us experience fatigue months or even years after completing active treatment. Unlike normal tiredness, cancer-related fatigue does not always go away with rest and sleep. For a brilliant description of what fatigue really feels like read Eileen Rosenbloom’s ode to fatigue.

3. Chemo-brain is real

Cognitive impairment to a lesser or greater degree can affect you both during and after your treatment. You may have the feeling that your cognitive abilities are slower and less acute than before – almost as if your brain is shrouded in a fog. We call this the “chemobrain” effect and the bad news is that the effect may persist for months or even years. Problems with memory and concentration are the most common cognitive complaints and while there is no specific treatment for chemobrain, regular mental and physical exercise has been shown to improve memory and brain function.

4. You will feel pressured to be a positive role model

I admit I caved in at the beginning to friends and family pressure to be positive when I was first diagnosed with breast cancer because it reassured the people around me. While I accept that for some people maintaining a positive attitude is a valid coping mechanism, for myself and many others, the pressure to always show our sunny side is a denial of our pain, anger, grief, and suffering. Bypromoting stoicism in the face of cancer, we create unfair expectations and deprive patients of an outlet for their darker fears by deeming them weak, and more insidiously, a barrier to their survival. This is my personal viewpoint, and it’s one that I don’t expect everyone to share. However, I mention it here so those who are newly diagnosed don’t feel they have to always present an optimistic, smiling face to the world. It really is ok to express your fears, your sadness, your anger, and your grief too.

5. Cancer is an illness, not a military campaign

It seems whenever I hear a story about someone with cancer, war metaphors frequently accompany the telling – in which battles must invariably be valiantly fought, won, or lost. Cancer is an illness, not a battle, and yet the language of cancer continues to be infected by connotations of war. In The Personal is Rhetorical: War, Protest, and Peace in Breast Cancer Narratives, Dr. Kristen Garrison writes that the language of war which dominates breast cancer discourse pervades every aspect of the experience and determines how the patient and others understand the illness. “Women are enlisted in a battle against the self, their bodies made war zones, with cancer as the enemy, medical professionals as infallible heroes, and treatments of search-and-destroy by any means possible,” she writes. “While this metaphor may serve to motivate some women, we should not accept it uncritically as the only and right way to make sense of this disease; furthermore, we should recognize how the war metaphor delimits the ways women can talk about breast cancer, potentially silencing women for whom a combat mode is inappropriate or ineffective.”

6. You need to be your own health advocate and speak up for your needs

I learned this lesson the hard way when I discovered to my cost that the topic of fertility preservation for younger women with cancer is often inadequately addressed. The decision to initiate fertility preservation must be made quickly before cancer treatment begins. The sense of urgency which surrounds a cancer diagnosis, and insufficient support and information meant I didn’t feel I had time to explore my fertility options before treatment began. This ultimately had a negative effect on my emotional and psychological healing from cancer. I wish I had known that in fact, I did have options and a brief window of opportunity in which to preserve my fertility prior to undergoing cancer treatment. Now I speak up and I speak out for all those women who will be diagnosed with breast cancer at a younger age and who deserve the chance to preserve their fertility if that is their wish.

7. Blogging can become your soft place to fall

Writing for Journeying Beyond Breast Cancer and linking into a community of like-minded bloggers has been the single most empowering thing that I have done in my journey with cancer. It has enriched my experience, brought new friendships into my life and expanded my horizons like nothing else. Cancer can be a frightening and lonely experience. Being able to write about it honestly and unsparingly and connect with others is a powerful release mechanism. Even though it is many years since my diagnosis of breast cancer, I still find strength, solace, and support in writing here.

8. You will find incredible support online

Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation. As human beings, we have an innate desire to feel connected with others who live life through similar lenses. I’ve discovered just how much people are willing to reach out to others to provide advice and support online. Online you can find 24/7 access to support, unbound by restrictions of time or location. Any person, anywhere, any time – whether they are a patient, caregiver, family member, or friend—can find someone else in similar circumstances who understands what they are going through.

9. Cancer doesn’t end when treatment does

I wish I had been better prepared for how I would feel when cancer treatment ended. I just assumed I would pick up where I had left off and get on with my life as if cancer had been no more than a blip. I wish someone had told me that cancer doesn’t end when treatment does. Sometimes, there can be a code of silence surrounding the aftermath of cancer treatment. There is an expectation that when you walk out of the hospital on that last day of treatment, your cancer story has ended. You are expected to close the page on that chapter and pick up the pieces where you left off before your life was abruptly put on hold with those words “you’ve got cancer”. But it’s not so simple. The fact is that for many cancer survivors the end of treatment can be every bit as terrifying as the day of diagnosis. I have come to believe that surviving cancer is more complicated than simply being disease free and that a physical cure does not mark the end of the healing process.

10. You need to grieve your old self and find a new way of being in the world

Grief is a natural response to loss and although we normally associate grief with the death of a loved one, the fact is that any loss can cause grief, including serious illness. I recently read a piece written by Corinne Edwards, author of When Your Husband Has Died, A Survival Guide, and much of what she had to say about the nature of grief and finding your new normal, struck me deeply on many levels.

The old normal is gone…after a period of intense pain, you’ll be different. The person you were is gone. It is an amputation. Eventually, a new person will emerge. It will be the new normal. A new life will start to take shape, but the limb you lost won’t grow back. You will have something in common with a soldier who bravely runs a marathon despite having a prosthesis for a leg…This new person will have a life which includes peace, love and even laughter, community and new friendships. It can and will happen in your own time.

What are some of the things you wish you had known at the start of your cancer journey which may have made a difference to your experience?

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84 thoughts on “Ten Things I Wish I Had Known When I Was Diagnosed With Breast Cancer”

I wish I had known how generous people are. I struggled to ask for help at first, but when I did I discovered that people really WANTED to help, they just didn’t know what to do. I became really clear about what I needed – a load of washing being done, the kids being picked up from school – and people were always really happy to help out.

I, too, struggled to ask for help. I kept thinking I could do it myself until I realized just how weak treatment had made me. I had so many people offering sincere help but I felt guilty to accept help for things I had always managed before. I resolved this by making my weekly “to do”list. I would post it on the refrigerator. Anyone that offered to help would remove a task from my list. For some reason it that made it easier to say, thank you, rather than feel guilty. Friends and family really do want to help with tasks because they don’t know what else to do. It makes them feel good and supportive. They are all blessings.

Sarah thanks so much for sharing such a great tip. I still find it hard to ask for help, but you are absolutely right in what you say. Make it clear what you need in practical terms and if people really do want to help, they will appreciate knowing exactly how they can do so.

Marie, Wise words… We’ve lost so many great women who started blogging when we did. We were and still are gladiators! Now that I’m doing 1010ParkPlace, I’m not in the daily breast cancer loop but do stay in contact with many of our group–plus meet new ones along the way–and doctors and researchers I met online. Loved seeing your encouraging words a few minutes ago on Instagram. I think of you often as well. xoxo, Brenda

Oh yes, I can agree with many of these – particularly being the good role model (something I impose upon myself in fear of scaring others) and that it is not a military campaign.

One thing I’m honestly glad not to have realize upon being first diagnosed was just how much my life would change. If I had known that, I just imagine it being too heavy a burden of knowledge, emotionally speaking. Personally, I came to realize all these things in time – and that gradual awareness was better. Nothing was ever going to be the same, but having hope that it might saved me – still saves me – at times. Mind you, the idea of ‘same’ has a way of changing as life brings more ups and downs.

Great article, lots of wisdom indeed. Thank you Marie. For me, #11 could be: every person gains their own wisdom through their experience, and we all have something valuable to share. There is a lot of common ground, but no one size fits all. There are many more pearls we learn as we go through the choc of diagnosis, the grueling treatments and surgeries once… or several times… #12: Every time is different, in my case, what I thought I knew from the first time, was not what I found out the 2nd time, nor was it the same the 3rd time… We all should just be able to go through it exactly how we feel we need to go through it, and not how others go through it, or expect that we should go through it… After all, we’re just like anyone else: doing our best, one day after the other. 😉

Christine, yes! I believe in this wisdom very strongly too. I hate it when I see people critical of others who choose to make different choices than they have made – whether that is in terms of treatment or attitude. Such an important lesson!

Hi Marie,
Gosh, you certainly nailed it. As Catherine said, not sure I would want to know them all before cancer and of course, it’s not possible anyway. Having said this, I did know a lot about cancer before I was diagnosed since I’d experienced it from a daughter’s vantage point. One thing I do wish I’d known earlier is that the way cancer is so often portrayed, definitely is not reality, at least it’s not my reality. It took me a long time to realize it’s okay to not be that strong, brave, courageous, smiling ‘warrior’. For a long time I felt like I was doing things all wrong. Sometimes I still do. Important post. Nice visuals. Thank you, Marie.

Marie, I love how you bring out in several of your points that no one should feel they have to try to conform to the expectations of others or see things the way our culture does when dealing with cancer. The idea of “celebrating the survivor” seemed quite inappropriate to me, even in the very beginning. One thing I wish I had known is that it would take time–a very long time–to process what it all meant for me.

It seems this point is resonating with many of us Lisa – that there is no one size fits all approach to cancer and how we deal with it. We have a powerful platform with social media to get this message out there – something that wasn’t available to quite the same degree when you and I went through treatment Lisa. Many thanks for taking the time to read and comment.

Thank you for this. Definitely relate to much of it.
Some things I wish I had known;
That it is possible to be okay with the loss of a breast. I was so distraught about getting a mastectomy, and because I had chemo prior to surgery I struggled with my dread for months all while being poisoned. I wish I could tell that me, that it would be okay, that it wasn’t the end of happiness, that in fact I would still be a woman even with early menopause and even with only one breast.
That I needed to go to the dentist prior to treatments- I would likely have declined one of the treatments I received that is impacting my teeth, which are sooo important to health. It wasn’t even mentioned to me by my doctor.
The whole lymph thing sucks, I wish that I had talked to another surgeon, when it became clear that the one I was seeing was against sparing my nodes. Especially in light of that there was no cancer left in my nodes, which as revealed by the pathology report. Losing my lymph nodes is the source of my greatest losses, as a result I have lost use of my right arm in so many ways. All while being told I should be grateful the cancer was gone.
Thanks again for writing.

Iridacea, this is something I have wished I could communicate to others who were having mastectomies, but it is extremely hard to hear as one faces it. In the twenty-some years I have been without breasts, I have even come to see advantages: I don’t have to wear them when it’s hot. My prostheses match one another. I can keep them high up on my chest where young boobs belong, even though I have grown old. They don’t get sore or hurt. The prostheses protect my chest instead of having breasts that need protection. This is certainly not to say I didn’t go through a fairly long period of grief over their loss.

The lymph thing indeed sucks. I lost 25 under one arm and 5 under the other and have been in treatment for lymphedema for a long time. However, compared to metastatic breast cancer, none of this means diddly-swat. I am one lucky person.

Iridacea your points are so well made and thank you for taking the time to include them here. I had completely forgotten about dental hygiene and it’s such an important point. I also feel just as you do when it comes to lymph nodes – I had mine all removed but there was no cancer in any of them. It’s been a debilitating loss since and I wish I had known more about the consequences and not chosen a full axillary clearance.

As tired and sick as I was, going thru my chemo and radiation , I wish I would have tried to continue light exercising ( if I would have even been able to, not sure) so I wouldn’t have lost so much muscle . After trying for many years, I never got my energy and muscle back that I had , but blessed to be here to talk about it .

I now know that you become a survivor the moment you are diagnosed. You then choose your path of treatment. Everyday for 13 years, I wake telling myself that I am a survivor! I have reinvented my life to satisfy myself, and it has been a healing experience.

Also the side effects from the pills they give you. They don’t mention the fact that the effects are cumulative and they get progressively worse. Hopefully once I get to 5 years and come off them I will start to improve.

Yes I can relate to all, there were things I didn’t know until after Txs were finished, I think some Doctors think the less you know the better you will cope, so so wrong, the fatigue is still over whelming, it’s been only 1 1/2 years since Txs finished, my life has changed I’m struggle at trying to get back my health where I was before and I just fall flat on my face, I’m now trying to be gentle on myself, I’m doing gentle Yoga and I feel better and am able to do about 15-20 min’s a day, I’m getting a little strength every day.. Thanks for your words of encouragement👍

The only thing I can add is that writing blogs may no longer be an option if the cancer has metastasized to the brain as mine did. I can still read others’ blogs in small doses and very slowly. Wish I had known that tidbit earlier so that I could tell others why I was no longer able to blog. The brain mets was a huge loss to me and others may have thought I had died or was just being anti-social or a deliberate lurker. I am still around and love to read others’ musings. Love you all and miss you all.

Than you all. I am 3 plus years out of surgury. Some days I can feel pretty normal others so changed. It is good to know there are places like this to share. Add o many people think you should just move on. As you all know easier said then done.

I wish I had known I was brave enough to tell someone I hardly knew because I’d heard him tell his story; and I wish I had known what wonderful doctors I would eventually find here in my new state far from my “home” doctors of many years. Thank you for starting us on this “open-ness.”

Enjoyed reading your article and I agree with some of the things you said, especially the relationship part. I lost some people in my life that were very important who just didn’t get it or understand. The thing I wish I had known was how unbelievably lonely you can be even with people around. I try very hard to not talk about recovery cause people when they ask really just want to hear “I’m fine” or I’m good”. Anyway I’m under a year into this thing and still trying to figure it all out
Out

Hello Marci – thank you so much for adding your voice to this and I agree with you about the loneliness and that expectation to say you are fine, because that is what people want to hear. That’s the wonderful thing about online communities like this – it’s ok to not be ok and to say it. Wishing you well as you journey forward in your recovery. Marie

I am so glad I found this sight. I had a bilateral mastectomy in 2011. I chose to have both breasts removed because I had watched my best friend die from breast cancer . Two years later my cancer had metastasized to my bones. My life changed so quickly . I’m no longer able to work at a job I loved and am so weary all the time . I’m lucky because my doctors are great and my daughter is a doctor . She can help me sort out the options. I agree that we don’t have to try to be heros. We need to do what we have to in order to get through each day. Love and blessings to all.

So glad I found this site I was diagnosed in 2009.for most of this time I have thought I was crazy.
I have just started feeling like I was alive. Its hard to explain to your friends .the day treatment stops you are suppose to be your old self it dose not happen.

I am a European with dual citizenship living in British Columbia, Canada since 2004. Was diagnosed on 10/22/2016 with bilateral invasive carcinoma and referred to a surgeon with urgency. During the 10 days building up to that first appointment I did an incredible amount on research. In the process I acquired all the reports and taught myself to interpret the results. Ultimately, I wrote a refusal of treatment under the “Informed Refusal” law. The battle was on and not with cancer. A double wammy so to say.

It is my intention to warn everyone for the medical establishment “cookie cutter” mentality and to urge those first diagnosed to REFUSE compromising their immune system (the lymph nodes), to DEMAND an MRI and a REFERRAL to an oncologist before they do anything else!!!!

Above all LISTEN CRITICALLY (read between the lines) to everything medical pundits tell you, mull it over and research the meaning of every medical term from their vocab.
It is about deciphering their secret code and confronting them at eye level – DARE TO SAY NO!!!

Lo and behold, you will find out that there is a slew of alternatives to the grueling treatments they intend to put you through – nine out of ten times you don’t need radiation and/or invasive chemo therapy. Look for medical institutions offering intraoperative radiation, while you are in the process of decision making re a treatment plan, ask for antineoplastic hormone therapy. It prevents the carcinoma from growing, and will most likely shrink the lump pre-operatively.

The above especially applies to stages 1-3 with a grade 2 – stages beyond that require a less defensive approach but are still worth much patient intelligent consideration.
Know what your options are prior to throwing yourselves before the lions!!

Love this post! More than halfway through neo-adjuvant chemo for triple negative bc, I am thinking about #9 a lot. I think the psychological pain is so much more difficult to address and alleviate than the physical suffering we have to endure as in this day and age, there are so many types of pills we can pop to help alleviate the physical pain.

I respect how everyone copes on their own journey, I too find #5 belligerent and aggressive which personally I feel doesn’t help the healing process. It’s our cells, our bodies and essentially the battle metaphor is one of fighting ourselves – DNA of our very own cells gone awry, so I struggle to make the connect of waging a war against ourselves.

Hi Juliana, thanks for reading and taking the time to comment. I love your take on the battle metaphor – it hadn’t occurred to me before, but it makes a lot of sense! Sending healing thoughts your way x

J, look up Norman Cousins, Wikipedia and take note of physician’s reaction to his statements!
BC patients have a voice but all too often they are not aware of their rights. At this moment my tumors are shriveling away into oblivion – I may get past any given invasive intervention – a matter of choice.

“If I had to guess, I would say that the principal contribution made by my doctor to the taming, and possibly the conquest, of my illness was that he encouraged me to believe I was a respected partner with him in the total undertaking. He fully engaged my subjective energies. He may not have been able to define or diagnose the process through which self-confidence (wild hunches securely believed) was somehow picked up by the body’s Immunologic mechanisms and translated into anti-morbid effects, but he was acting, I believe in the best tradition of medicine in recognizing that he had to reach out in my case, beyond the usual verifiable modalities. In doing, he was faithful to the first dictum in his medical education: above all, do not harm.” Norman Cousins, Anatomy of an Illness as Perceived by the Patient, 1979

I wish I had known that it is perfectly normal to cry at any time day or night. Sometimes I felt ashamed for being so self-pitying and held it all in. But crying is normal for whatever reason, mostly it is from fear of the unknown, even though my care and treatment here in France was fantastic. I finished the long term meds in August 2016 and the prognosis is good but cancer does change you, no doubt about it.
My wishes go to every man, woman and child – who at some point in their lives – may have the misfortune to be diagnosed with cancer.

You have no idea of how lucky you are for having been treated in Europe. I down right envy you. As for tears, in my case, I haven’t shed a single one and I was told that holding them in is systemically unhealthy. Again, you are incredibly lucky 🙂

I am so glad I found this site. I am almost six years out from a bilateral mastectomy. I had invasive breast cancer as well as a malignant lymph node. I relate to so much of what you all have said. Even though I am surrounded by a wonderful husband and two grown children along with what I call my seven little treasures ( grandkids of course) a sister who is also my best friend, as well as my mother, Cancer has been a very lonely experience. My husband understands more than anyone, but I too feel like now that my treatment has ended that I am expected to be “over it”. I’ve survived and to be any other way would not be in line with the “the positive person I am”. My sisters exact words. God bless her because I know she means well. When I was dx I was stoic because it is natural for me to want to protect everyone around me. So there were no tears, I was on autopilot. But in the last two years I found that it is bubbling to the surface and I will start crying at a McDonald’s commercial. My family keeps telling me I should go to a support group or counselor and maybe that would be good for me. Cancer was a trauma beyond the surgery. When I was going through the chemo my white count dropped so low that I ended up in the hospital for 11 days with each treatment until my doctor came and in and said “we are killing you with the chemo, I don’t think we can continue.” They said if I had waited 12 more hours to come in, they may not have been able to save me. So it was traumatic. I don’t feel like I have ever fully come back from that. I do have other health issues, but there are days when the fog rolls in and I just can’t get out from under it. It is a great source of frustration. But still, I do appreciate every single day and I know I am blessed beyond measure. I appreciate you all sharing your stories so much. It has made me feel less alone. Sending you all love and light.

I am really shocked by the content of your blog – mostly because I experience none of it – I am living the life of a hermit without a social network, support group and/or safety net. Isolated as I chose to live, it acquits me from either pretending and/or from complaining & explaining – AND – I cautiously keep my distance from anything pertaining to BC Cancer Agency – an institution I like to refer to as ‘The Temple of Doom’.

Yes, the wait times are grueling but in my case, that is primarily because I experience any kind of unsolicited time consuming interference into my personal life as gross invasion of privacy.

Ironically, I have myself to blame for all the waiting and for keeping medical establishment dangling with their disregard for the patients’ emotional distress, feelings of powerlessness and often misdirected fury against anything and everything disrupting the patient’s once comfortably well structured lives.
I am to blame because I refused the BC Breast Cancer Agency ‘Fast-Track Cookie Cutter’ approach and dug my heels in, demanding an MRI instead of lymph node biopsy, demanding neoadjuvant treatment for during the time I needed for negotiating a Plan B: oncoplastic surgery or my veto on a Plan A: ruthless maiming without further recourse for future plastic surgery.

The principles I go by are:

– to regard breast cancer as a lucrative industry
– to regard breast cancer as a pharmaceutical and governmental cash cow
– to keep in mind that my personal well being holds no place in the industry

Besides rights, the patient has options and since they are layman they should be granted the right to ultimately formulate their own treatment plan and to take the time they need for doing so.
As long as there is no metastasis you do not need radiation and especially not chemotherapy – all this treatment is preventive when your cancer is not in an advanced stage.

Prevention saves the government billions of dollars to the patients’ detriment – sorry you took the bait and fell into the trap.

Personally, I do not fear death – I am only concerned about the manner of death – euthanasia has my preference

Reblogged this on cystaract and commented:
All of this truly resonates and the hidnsight of others experiences is such a warm harbour. Thanks to all those who have shared and cared. Wishing you health and harmony.

Loved this Marie, all of your points resonate and reading through I feel that someone who has been recently diagnosed would feel a great sense of ‘persmission’ to experience their cancer their way. Good health to you all.

Interesting blog, as a ‘survivor’ of 4 years, there are many thoughts in this blog that resonate with me. In particular the link to a paper on the ‘war rhetoric’ used by many in the ‘fight against cancer”.
My personal response to breast cancer treatment is going to be exhibited from October 9th – 30th 2017 at the Hearth Gallery, University Hospital Llandough, Cardiff. I am very interested in getting feedback for the images that were produced in collaboration with 12 other artists. So, if you are in Cardiff around this time please do drop into the gallery.
I hope you don’t mind me mentioning this here.
Thanks Caroline

I am a survivor of 3 years and wish I would have known some of these things I couldn’t get reconstruction because my body rejected the drains so sometimes when I look in the mirror I don’t feel like a complete woman

I did not have to have chemotherapy. For that I am grateful. I had what they called a “partial mastectomy” (large lumpectomy?) in October 2017 and started radiation just before Christmas. Radiation was completed on Jan 16, 2018 and we left for Mexico on Jan 24. My step counter tells me I walked 10,000-12000 steps almost every day while we were there. Occasionally I would hit a “wall” of fatigue and need to sit down with a bottle of water, but for the most part the fatigue was manageable.
I was terrified of aromatase inhibitors but when my oncologist said if I had intolerable side effects I could just stop taking them rather than add multiple drugs to try to address the side effects, I settled down and started them. Today was day 48 on Anastrazole and so far I feel pretty much the same as I did before starting it. Maybe some thinning hair (or is that just my paranoia?), but that’s about it.
Over the last 7 months I spent a lot of time and energy worrying and being afraid of surgery, radiation and hormonal therapy.
Things I wish I had known:
– surgery is uncomfortable post-op, but not as uncomfortable or disfiguring as I feared.
– radiation is annoying because of multiple trips to the Cancer Clinic, but not as fatiguing or uncomfortable as I feared
– not everyone experiences horrible side effects from aromatase inhibitors

I don’t feel lucky to have had cancer, but I am happy to feel as good as I do now that treatment is complete. I know my cancer story may not be over, that I may experience late side effects from radiation or AIs, or a recurrence of the cancer, but for now life is good.

So very interesting to find out that I too also cried every day I Never told my so called friends..Had a lumpectomy plus anxilery node removal even though I questioned that many times, then 16 very strong radiation treatments.A oncologist that was as cold as ice,he put me on aromatase inhibitors until I could not walk use my hands had horrible interactions with the othe drugs I was on.Hope I will be able to enjoy whatever years I have left now.
This is a very big money making business for the medical profession.They see dollar signs $$$$ when they find out I have had breast cancer.
Glad to hear that you were able to research all .My best wishes to all of women who have gone through this

Sharon, I am so sorry you have had to go through so much with your treatment. I too had a full axillary clearance and I am still angry about that – I should have had a sentinel node biopsy but wasn’t offered the option and it was only after my treatment finished that I realized this. My surgeon and oncologist were cold and distant too. All we can do now is to let other women know what we now know and help them learn from our mistakes. Sending you healing wishes. Marie

Interesting comments. I find my faith, family and friends got me through breast cancer initially. I was diagnosed twelve years ago, stage three and I went through extensive treatment. Yes, it has been a journey and many times a long one, but God never promised an easy time here on earth. I find that the MOST important thing about breast cancer is finding the right doctors. I just happen to have moved to New Orleans and found the best care around from oncologists to reconstructive surgery doctors. It takes a team of doctors when you are diagnosed with breast cancer. It has been a joyful transformation for me and yes, even though we don’t necessarily want to be a member of this club I have met so many wonderful people along the way because of it.
Still fighting!

Hi Susan, thank you for taking the time to share your experience here. I certainly agree that your choice of doctor is a critical one. Wishing you continued healing on your journey beyond breast cancer

I actually didn’t suffer much from my breast cancer. I also listened to my body. It is always right. Before getting the confirmation of breast cancer, all my hair fell out, so I was prepared for the cancer diagnosis. I knew exactly what I wanted to do. I made decisions based on what I already knew, especially about myself. I opted out of chemotherapy, because the risk/benefit was going to change my risk by 2%. Although I’m sure my oncologist would have preferred that I had gone through it. He respected my decision.

There have been some positive things to come out of my diagnosis. I have reconnected with distant family members, and have made new friends.

The only time I really cried was long after my treatment. While watching a show about the history of cancer on PBS. I’m extremely lucky to have cancer now, instead of years ago where doctors multilated women. There was a doctor that was doing lumpectomies, because he noticed that outcomes between mastectomies and lumpectomies were no different. He was ridiculed by his peers, but he kept going. I’m so grateful to someone, who ignored his or her peers. I’m glad I didn’t have to have my body multilated.

Hi Jenny, I really appreciate you taking the time to read and comment on this post. I agree with you so much about how upsetting it is to think about the brutal way cancer was treated in the past and I have faith and hope in the future that the treatment will continue to become ever more targeted and less invasive.

There’s a lot of imagery out there of breast cancer survivors wearing pink and running 5ks or doing the Susan G Komen 3-day Walk, smiling, hugging, etc. When I was diagnosed, everyone around me kept saying “you got this!” like I was some athlete taking the field before a big game. It was less a war metaphore and more a sports metaphore. I wasn’t prepared for just how sick I was going to get.l wish I’d known the truth – that chemo is torture, radiation causes painful burns, recovery from surgery takes a long time, a year later, I’m still exhausted and have little appetite and that’s normal because to kill the cancer you must digest poison. My toenails haven’t grown back and my hair is horrible. My family and friends can’t begin to understand and it’s very lonely. I wish I’d known that the survivorship community does a huge disservice to survivors by only portraying this “positive pink sisterhood” image like it’s some kind of sorority. Like the blog stated, it’s a serious illness that is very difficult to recover from and you’re never the same.

Dear Sonia, I am so happy you have found us. Please reach out anytime either here, or on our Facebook or Twitter accounts if you have any questions or comments you’d like to share with the community. We are here for you.

Hi. Cannot thank you enough for this post. I completely identify with it all. In ln partiular this notion that we have to find an epiphany and carry with us an aura sunshine and positivity, and if we dont, we are lacking in our soul searching journey. This is refreshing. Thank you.

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". . .and the world cannot be discovered by a journey of miles, no matter how long, but only by a spiritual journey, a journey of one inch, very arduous and humbling and JOYFUL, by which we arrive at the ground at our own feet, and learn to be at home."
Wendell Berry